#22 Hep C Community News by Hepatitis SA

HEP C COMMUNITY NEWS Autumn 03

Issue 22

Clean Needle Programs save lives and money. One of our best returns for the Dollar spent. Full Story page 10.

Inappropriate infection control strategies. People with hepatitis C are not required to disclose their status for infection control purposes.

Feature Article page 6

Hepatitis C Community News

Contents

4 The Parade Norwood SA. 5067 Ph. (08) 8362 8443 SA Regional Callers 1800 021133

Team Profile

Hep A&B Vaccinations

Volunteer’s Corner

Feature Article

6—8

New Resources

Anti-Discrimination

Non-waged membership -— $5.50 Waged membership -——– $16.50 Organisational membership — $55

Viral Hepatitis Centre

(GST inclusive)

Mosaic Counselling

Decisions

Inspirations

Eating Well

15—16

You can request a zero-cost membership Donations do not attract GST

Postal Address

Men Health & hep C survey

Hep C Community News PO Box 782 Kent Town SA 5071

Clean Needle Programs

StreetLink Exposed

Recipe Corner

Resource List

PH. (08) 8362 8443 Fax. (08) 8362 8559 Email: hepcsa@senet.com.au Web site: www.hepccouncilsa.asn.au

We welcome contributions from Council members and the general public. Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of S.A. Inc. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist.

Hepatitis C Community News

Issue 22

Hep C Council Team Profile It has been some time since we profiled the team here at the Council. As there have been Liz has been an some changes recently we thought it would be inspiration to both staff and volunteers time to update our constituency.

alike during her Firstly, Liz O’Keefe has been Acting Coordinator since tenure. During the short six months in Kerry Paterson left us six months ago. Liz has been which Liz has been working in Hep C programs with prisoners and their Liz O’Keefe partners for about six years at OARS SA. Liz has since acting, she has motivated, renewed and enthused workers with gone back to OARS SA. Thanks to Liz for care taking her innovative vision and unique personal over the past six months. skills. Latest News! The staff and volunteers at the HCCSA would The Hepatitis C Council has a new Manager...Welcome like to take this opportunity to thank Liz for her Laurie Tofan to the team. Laurie joins us with extensive contribution to the Council and the affected experience in nursing, community services and financial community. management. Thank you for all that you have taught us. Our loss is their gain. Best Wishes. Leslie Wightman is the Rural Educator. Her work targets health and community workers in regional and remote communities to increase their capacity to respond to the needs of people affected by Hepatitis C within their communities. Leslie also communicates with people affected by hep C and advocates at a system Janette Chegwidden is our volunteer coordinator. Janette is responsible for level regarding key issues. selection, recruitment, training and support of all volunteers at the Council. Janette is keen to Kristy Schirmer is our Information Officer. She is motivate volunteers to improve their skills and responsible for quality control of all our resources. build confidence. Hence, many of our Kristy also coordinates the Hep C Info and Support volunteers are engaged in training and Line. education. Catherine Healy and Sabine Whittlesea are our Administration Officers. They keep the place ticking The Volunteer Team at HCCSA is our life’s over by coordinating reception, our phones, our mail and blood. Volunteers currently work in several stock orders – anything that comes in or out of the primary areas, which include: Reception, Info building basically. Catherine and Sabine also spend and Support Line, as Positive Speakers and in many hours on the phone (and sometimes face to face) resource production and distribution(this is with people who ring for support and information. crucial work which provides huge amounts of Deborah Warneke has been our Metro Educator for some time now with Sharon Drage recently joining her. Deborah and Sharon coordinate the community education program. They take the information out to community groups including hospitals, health services, TAFE, the hepatitis C sector and work sites. The information and education sessions are available to any one who requests them. The program is supported by Positive Speakers who tell their stories at workshops and sessions to help break down stigma and discrimination. Presently our Educator’s program is working to ‘educate through the arts’ in projects such as a Women’s Arts Group, Youth Drama, Mosaic project and hopefully a Men’s drumming Group.

written information to the public and the hepatitis C sector across the state). The Volunteers will also help with anything in between by working on information sites, cooking BBQs, cleaning up after functions, shopping – you name it! None of this important work would happen without this dedicated Team. We also have several Volunteers on our Board of Management having input to decisions about how the Council should operate.

Hepatitis C Community News

Issue 22

Hep A+B Vaccination Rate of natural progression I have hepatitis C - should I be vaccinated against other heps? Yes, it is recommended that people who have hepatitis C be vaccinated against hepatitis A and hepatitis B if they are not already immune. This is because having two or more different types of hepatitis virus can increase the chance of serious liver damage. Doctors can order antibody tests for hepatitis A and hepatitis B that show if you have been exposed to the disease and if you are now immune. This is useful in deciding whether or not you need vaccination (NB. vaccines are not yet available against hepatitis C or HIV.) It is important to realise that not all antibody tests mean the same thing. Antibody tests for hepatitis C and HIV are different from those for hepatitis A and B in that a positive antibody test for HIV or hepatitis C simply tells you that you have been exposed to the disease but does not indicate that you have developed immunity. Where can I get hep A and B vaccinations? You can be vaccinated by your GP. Not all GPs keep stocks of vaccines. You may have to get a prescription from your GP, buy the vaccine from a pharmacist and then go back to your GP. Costs vary from one pharmacy to another so it may be worth shopping around. Other services that may provide these vaccinations free of charge or at low cost include hospital and community health hepatitis clinics, some methadone clinics, and Sexual Health Clinics. Answered by Helen Taylor - hepatitis project worker at the Albion Street Centre and a former hepatitis policy analyst for NSW Health. This article taken with thanks from The Hep C Review, NSW, Ed40. Soon to be uploaded to www.hepatitisc.org.au/reviews/reviews.htm

Rate of natural disease progression in patients with chronic hepatitis C Researchers from France and the United States find that an interval of 4 to 5 years is needed between liver biopsies to measure change in patients with mild liver disease. The interval at which liver biopsy should be repeated in untreated patients with chronic hepatitis C is not defined. In this study, researchers examined fibrosis change by METAVIR scoring in patients who had 2 or more liver biopsies. The team's findings are published in the March issue of the Journal of Hepatology. The research team studied 180 patients with histologically proven chronic hepatitis C. They found that the mean interval between biopsies was 3.67 years. This interval was 3.08 years in the 16 patients who had had 3 biopsies. The team performed univariate and multivariate analyses to determine factors associated with liver fibrosis progression. The mean interval between biopsies was 3.67 years. They found that the median rate of fibrosis progression per year was 0.04 to first biopsy, 0 between first and second biopsy, and 0.17 between second and third biopsy. Multivariate analysis determined that age at first biopsy >40 years (OR=5), and alcohol consumption of 1 to 50 g per day (OR=4), and more than 50 g per day (OR=8) were the only factors associated with severe fibrosis. The team found that the number of patients who increased in fibrosis stage was significantly higher after 4 years. Dr Jean-Pierre Zarski's team concluded, "An interval of at least 4 to 5 years is needed between liver biopsies to measure change in patients with mild liver disease."

J Hepatology 2003; 38(3): 307-14 21 February 2003

Taken with thanks from Hepv-L

Hepatitis C Community News

Issue 22

Volunteers Wanted The Hepatitis C Council (HCCSA) has a limited number of vacancies for volunteers to work in the production and distribution of resources.

What do you get out of volunteering at the HCCSA? ♦

Gain valuable workplace skills

The volunteer program runs on Mondays, Tuesdays and Wednesdays between 10.00 – 4.00. Within these hours, your shifts can be negotiated. The minimum commitment required is a three-hour shift once a week. No experience is required, however, previous administrative experience will certainly be valued! Training will be provided.

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“Giving something back” to the community

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A sense of achievement at the end of your shift

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The opportunity to meet new people in a friendly environment

________________________________

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Assists in building self esteem

The kinds of things that volunteers do are: ♦

Filling order forms for organisations that require our resources

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Making up resource packages

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Mailouts to our membership

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Washing up (staff have to do this also!)

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Producing our resources (using photocopiers, computers and printers)

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Graphic design – designing posters

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Staffing information stalls at public events (e.g., orientation weeks at universities, WOMAD, health expos)

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Speaking at information sessions (after appropriate training)

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Reception work (if skills are appropriate)

If you think you might be interested in this kind of work, even if you do not have experience, please call the volunteer coordinator, Janette Chegwidden, on 8362 8443 for a no obligation chat.

Hepatitis C Community News

Since July 2002 there have been

66,439 resources distributed with the help of resource volunteers.

Issue 22

Feature Article Inappropriate infection control strategies People with hepatitis C are not required to disclose their status for infection control purposes. NSW Health has developed a comprehensive infection control policy, which provides clear guidance on the standard infection control procedures necessary to prevent the spread of blood-borne viruses such as hepatitis C in health care settings.77 Infection control is also incorporated into legislation and/or regulations for medical practitioners, nurses, physiotherapists, dentists, dental technicians and podiatrists in NSW. Under the relevant Acts, practitioners must not, without reasonable excuse, fail to comply with infection control regulations. For example, the Dentist (General) Regulation 1996 (NSW), has recently been amended and now sets out standard infection control procedures which must be applied by all dentists.78

Standard infection control procedures are designed to be routinely applied, regardless of whether a person is known or assumed to have hepatitis C. Infection control procedures are commonly called “universal” or “standard” procedures, precisely because they must be consistently applied. Given that approximately 40% of people in NSW who have been exposed to hepatitis C are unaware of their status, infection control measures based on assumptions or knowledge about a person’s hepatitis C status would be ineffective in reducing the risk of transmission. The application of standard infection control procedures is essential in reducing the risks of hepatitis C transmission within the health care setting. Such procedures, consistently applied, also ensure that people with hepatitis C are not required to disclose their status and that where a person’s status is known, there is no need for their status to be disclosed to other health care workers in the misguided view that this is necessary for infection control purposes. Infection control practices that rely on knowledge of a person’s hepatitis C status expose both health care workers and patients to the risk of infection. This in turn exposes Area Health Services in terms of their legal obligation in relation to the health and safety of their employees, and their duty of care to their patients.

Despite a clear NSW Health infection control policy, one of the most common problems people with hepatitis C experience is disclosure of their status in the name of infection control. This is often the result of ill-informed fears regarding hepatitis C transmission, and inadequate knowledge and/or inappropriate application of standard infection control procedures. Evidence to the Enquiry indicates that poor knowledge and application of standard infection control procedures commonly occurs in hospitals and dental surgeries. This exposes people to the potential for discrimination and often leads to actual discriminatory treatment. Infection control policy, NSW Health, Circular 99/87. This policy is currently being updated and a revised draft policy is currently under consideration. 78 The Dentists (General) Regulation 1996 (NSW), was amended by the Dentists (General) Amendment (Infection Control Standards) Regulation 2000 (NSW), and commenced on 17 November 2000. Clause 21 of the Dentist (General) Regulation 1996 (NSW) provides that a person engaged in the practice of dentistry must not, without reasonable excuse, fail to comply with the infection control standards set out in Schedule 2 to the extent that they apply to the person in the practice of dentistry. 77

While in hospital I had to wear a different colour armband which distinguished me from other patients. My baby also stood out from the others with “universal precautions” written all over her cot. I thought hospitals had standard precautions in place for all patients, so I’m not sure why we had to stand out from the others.79 A person was referred by a treating dentist to a specialist to have a number of teeth extracted. The dentist told him that he must disclose to them that he has HCV when making my appointment so that they can schedule me as the last appointment for the day. “I asked why… and was told that they would literally hose down everything in the room afterwards… “in your case we want to wipe down every inch of the room.””80 (Continued next page)

Hepatitis C Community News

Issue 22

A survey of the knowledge and attitudes of 1,577 registered nurses across Australia was conducted in 1998. The findings show a clear lack of knowledge among many respondents which often manifests in the adoption of inappropriate infection control strategies.81 Some of the findings include: ♦ 25% of nurses agreed with, or were unsure, about the statement, “patients with hepatitis C should be nursed in an isolation ward” ♦ 40% agreed that they should be free to choose whether they directly care for a patient with hepatitis C and another 19% were unsure whether this should be so82 ♦ 25% of respondents acknowledged that they felt uncomfortable working with colleagues who have hepatitis C ♦ 18% agreed or were uncertain about whether patients with hepatitis C should be specifically identified using coloured armbands, even though this is not NSW Health policy or practice.

Last in the surgery queue Evidence to the Enquiry indicates that when a person is known or assumed to have hepatitis C, they are often placed at the end of the surgery list. This means infection control procedures are being applied to reduce the risk of transmission only where a person is known or assumed to have hepatitis C. Practices such as placing people with hepatitis C last on the list for surgery create an environment where reliance is placed on having knowledge of people’s hepatitis C status and unnecessary disclosure is required. As outlined, infection control measures based on assumptions or knowledge about a person’s hepatitis C status are ineffective in reducing the risk of transmission, when a significant proportion of people are unaware of their hepatitis C status.

On the day of the operation I arrived at 1:00pm. I went to the surgical ward and I was told by a nurse to wait in the waiting room. Shortly after this I heard someone from the nurse’s desk say “____is here, he is the last cab off the rank”. Then the head

of the ward came in and abruptly stated “make yourself comfortable, you have a very long wait ahead of you, the list has been changed, you are last and we do not have a bed for you.”83 I will invariably be the last patient through the hospital procedure room, it doesn’t matter if they’ve asked me to sit there since 7.30 in the morning… you can bet your bottom dollar that I will be there at 3.30 in the afternoon… I don’t mind waiting but I think that they could be a little more realistic and go “Look, why don’t you come in at 12.30pm, you don’t need to fast for breakfast just don’t have lunch”… you do feel marginalised, you do feel discriminated against, you do feel less than, so I don’t see that it would cost (hospital staff) anything to ameliorate that feeling for the patient by treating them as you would treat any educated, thinking person and tell them what is going on...84 A client had to go and have skin surgery… when she went to see the surgeon she thought she’d be honest and say “Yes I have had HCV”… from that moment on she was told that she would be on the “dirty list”, she was told that the sheets that they used on the surgery would be burnt, that she would be the last one on the day.85

TRAIDS, Submission No. 61. Individual Submission No. 65. 81 Preliminary summary extract of 1998 hepatitis C knowledge and attitudes survey of registered nurses by Huntly, S. et al, Hepatitis C Council of NSW, unpublished, 2001, Sydney. 82 Despite this view, it is clear that health care workers are not entitled to refuse to provide services on the basis of a person’s hepatitis C status: see coverage under federal and NSW antidiscrimination law below. 83 Individual Submission No. 91. 84 Individual oral submission, Wollongong hearing, 9 May 2001. 85 Health care worker, Wollongong hearing, 9 May 2001. 79 80

(Continued on page 8)

Hepatitis C Community News

Issue 22

Feature Article cont. The Australian Dental Association (NSW Branch), in their submission to the Enquiry, indicate that they strongly support and encourage their members, through regular education programs and provision of resources, to adopt universal infection control measures.86 A study of blood-borne virusrelated discrimination in dental services was undertaken in 1998.87 Key stakeholders including dentists, hepatitis C and HIV/AIDS organisations, and State and Territory health authorities, were invited to review policies, procedures, organisational arrangements and other systemic issues which influence the quality of oral health services. The consultations highlighted that: ♦ ♦

continuing education concerning infection control procedures is fundamental to reducing discrimination in health services monitoring infection control procedures was critical, with many consulted agreeing that such monitoring should be linked to accreditation of dental workplaces.

Given the recent introduction of infection control procedures into the Dental (General) Regulations 1996 (NSW), as outlined above, there is an opportunity to improve knowledge of infection control procedures among dentists and to support compliance with the regulations. Non-discriminatory policies and practices, particularly standard infection control procedures, are more likely to influence the culture of institutions and professional groups where: ♦ ♦

the rationale for such procedures is well understood implementation occurs in the context of existing quality assurance systems.

The Enquiry concludes that: ♦ ♦

♦

there is a poor understanding among health professionals of the rationale for standard infection control procedures there is an urgent need to improve the implementation of standard infection control procedures particularly in hospitals and dental surgeries effective implementation of standard infection control policies and procedures are essential to reduce discrimination in health services and ensure the safety of both patients and health care workers.

Infection control recommendations The Enquiry recommends that: 14. Area Health Services ensure that: ♦

♦

hepatitis C education for health care workers includes standard infection control procedures, and assesses health care workers’ knowledge of such procedures and their understanding of the rationale for standard infection control procedures all health services within their jurisdiction have in place standard infection control procedures appropriate to their health setting and that the implementation of standard infection control procedures occurs in the context of existing quality assurance systems at service level.

15. The Australian Dental Association (NSW Branch): ♦

♦ ♦

undertake ongoing education concerning standard infection control procedures that incorporates the rationale for such procedures ensure that implementation of standard infection control procedures is adequately monitored link adequate systems for monitoring standard infection control procedures to accreditation of dental workplaces.

Australian Dental Association (NSW Branch), Submission No. 16. Meihubers, S., Godwin, P. and Rotem, A. 1998 Blood-borne virus related discrimination in dental services, Australian Health Review, Vol. 21, No. 3, at pages 98 and 100. 86 87

Reprinted with permission and thanks from C Change Report of the enquiry into hepatitis C related discrimination Anti-Discrimination Board of New South Wales November 2001 at pages 46 to 48.

Hepatitis C Community News

Issue 22

New Resources

Moving on after treatment â&#x20AC;&#x201C; a post-treatment guide for people with hepatitis C

This resource is for people who have used antiviral treatment for hepatitis C. It provides information about some issues that may need to be dealt with after either monotherapy or combination therapy treatment has finished. Partners, families and friends of people who are on treatment or who have completed treatment may also find this resource useful in understanding issues that people who have undertaken treatment have to deal with.

Adapted from â&#x20AC;&#x153;Moving on after treatmentâ&#x20AC;?, Introduction, page 2

The Hepatitis C Council of SA would also recommend this resource if you are contemplating monotherapy or combination therapy. It is important when making the treatment decision to understand what effects may occur after treatment has ended.

If you or a partner, friend or family member has undergone treatment you may like to take this resource to help provide suggestions for how you can move on with life after treatment.

Hepatitis C Community News

Issue 22

Hepatitis C National Anti-Discrimination Project 2002-2003

Discrimination and hepatitis C is unfortunately a familiar duo for positive people and those working in the hepatitis C sector.

Development of “Your Rights and Responsibilities”, a resource for people with hepatitis C *. This resource will be a general information guide about people’s rights and responsibilities under State and federal legislation.

Development of an anti-discrimination training resource for staff and volunteers at Hepatitis C Councils across Australia. This resource will help HCCSA workers to greater understand and identify discrimination when it occurs and work with clients in identifying their options for taking action.

Delivery of anti-discrimination training for staff and volunteers of Hepatitis C Councils across Australia. Similar to the written resource, the one-day workshop will further train workers to be more aware of legislation and appropriate referrals for people experiencing discrimination.

The recent “C-Change” report that came from the NSW Anti Discrimination Board enquiry in to hepatitis C related discrimination states: “…discrimination against people with hepatitis C is rife. It is often the result of an inadequate understanding of the transmissibility of hepatitis C, driven by irrational fears about hepatitis C infection. However, perhaps more powerful than ignorance about transmission, is that hepatitis C infection is inextricably linked to illicit drug use, which is a highly stigmatised behaviour”. 1 The National Hepatitis C Strategy2 identifies “preventing discrimination and reducing stigma and isolation” as one of the four priority areas for action. The National Strategy also recognises the importance of “promoting the rights and increasing the ability of those affected by hepatitis C to participate in society and to remove barriers to the exercising of those rights”. So what does this mean for the affected community? The Australian Hepatitis Council (AHC) has developed an anti-discrimination strategy that aims to address the priorities identified by the National Strategy. One aspect of the AHC’s anti-discrimination strategy is the Hepatitis C National AntiDiscrimination Project. The outcomes for this project will consist of three main parts:

With the powerful tools of information and education, the HCCSA will work with the affected community to tackle and redress this ongoing issue. * There is a new Hepatitis C and Disclosure resource due to be released by the AHC. This will complement the work of the anti-discrimination project. Stay tuned for more information! 1. Anti-Discrimination Board, C-Change – Report of the enquiry into hepatitis C related discrimination, November 2001, p 1 2. National Hepatitis C Strategy 1999-2000 to 20032004, Commonwealth Department of Health and Aged Care (CDHAC), Canberra 2000, p 47

Hepatitis C Community News

Issue 22

The Royal Adelaide Hospital Viral Hepatitis Centre is 1 year old !!!!! It was our vision to provide a supportive clinical service which is responsive to the needs of the South Australian hepatitis C affected community (& as it turns out, to a couple of Victorians also!). We have focused particularly on assessment, management and the treatment of hepatitis C. The treatment focus has seen the implementation of a Shared Care Program. This program guides the GP and patient through the assessment and treatment process, empowering them with clear instruction on scheduling of doctor’s appointments and blood testing requirements. It provides the patient and their support person/s with an environment to discuss expected outcomes of treatment and the potential side effects of treatment. It is also a forum to explore wider hep C related issues. The addition of the Clinical Nurse Consultant (Co-ordinator) has meant greater access to experienced advice on hepatitis C care.

and Ribavirin (Pegylated Interferon is also available in limited supply), which we feel is a maximum number to provide a quality service. The waiting time for someone to start treatment is around 6 months once the Specialist has reviewed the patient and prescribed the drug – this waiting period will vary depending on specific patient need. One of our objectives is to prioritise the need for treatment, and currently for those in greatest need the wait is around 8 weeks. We are always mindful that treatments with improved outcomes are becoming more available. A satisfaction survey is underway to get feedback from the patient’s, Specialists and GP’s who have taken part in the shared care program over this past year. The results should be available within the next couple of months and will help us to identify the strengths, weaknesses and opportunities of our program.

Catherine Bunting

We have found the program useful for particular groups within our community. For example, the expectation on rural patients to travel to a metropolitan location to receive care is greatly decreased. Patients within correctional facilities now have the opportunity to access treatment whilst incarcerated. The shift of follow-up appointments from treating Specialist to the local GP has been particularly user friendly for people from linguistically and culturally diverse backgrounds, who will often choose a GP from their own culture, and one who speaks their language. We are currently treating around 50 patients at any one time, with the combination of Interferon

We welcome all feedback… so don’t be shy!

To be referred to our clinic just speak with your GP. Referrals to:

The Viral Hepatitis Centre Royal Adelaide Hospital Nth Terrace SA 5000 Ph (08) 8222 2081 Fax (08) 8222 5883

Catherine Bunting Clinical Nurse Consultant Viral Hepatitis Centre Royal Adelaide Hospital

Hepatitis C Community News

Issue 22

Mosaic Counselling Service MOSAIC Counselling MOSAIC Counselling is now 5 months old and Bill and Anne have been busy seeing clients, promoting MOSAIC and forging strong networks and relationships with the HIV and hepatitis C sectors. We have particularly enjoyed our work with the diverse group of clients we have seen - clients ranging in age from 14 to mid 50s, and from diverse cultural backgrounds; we have met with couples, single people, and parents and children who are affected in some way by HIV or HCV. Some have come for 1 or 2 sessions; others have continued to see us regularly for a couple of months. There are a whole range of concerns clients have sought counselling for, including grief and loss, relationships and separation, disclosure, depression, isolation, self esteem and the effects of discrimination. Most clients have come in to see us at 55 Hutt Street Adelaide, but we have also seen people at regional offices in Marion and Ridgehaven. We have also provided telephone counselling for country people. Networking and collaboration is an integral part of our work. We believe it is important in setting up this new service to ensure we are well known in the sector and that workers and volunteers feel confident to refer people to us. We also draw on the wisdom and experience that already exists in the sector, supporting and affirming the value and

importance of different roles of services for people affected by HIV or HCV. In addition to the primary contact with the Hep C Council and HIV organisations we are making contact with health workers involved in treatments, mental health and youth workers, staff in Correctional Services, indigenous and other culturally diverse communities.

What’s next? We are planning to run some groups next year and are particularly excited about a Program called “Moving towards Wellness”, which we hope will get under way around April. After a recent trip to the Riverland with the Council’s Rural Educator Leslie Wightman we hope to build our links with country services and explore ways in which we can make MOSAIC Counselling accessible to country clients.

Please give Anne or Bill a ring on 8223 4144 if you would like some more information about MOSAIC Counselling.

Anne Bourne and Bill Gaston MOSAIC Counselling

Moving Towards Wellness Anne Bourne and Bill Gaston from MOSAIC Counselling, Fred Robertson a volunteer with the Hep C Council and Katherine Lean, from the HIV Women’s Project have recently attended a Leaders Training Workshop for a Group Program called Moving Towards Wellness. We are all very excited about being able to offer this group program to people affected by Hepatitis C and HIV/AIDS. The course runs for 2.5 hours per week for 6 weeks and it aims to support people with a chronic illness to improve their health and well being. Topics include symptom management, healthy eating and exercise, dealing with depression, handling stress, frustration and fatigue and doctor-patient relationship. We are planning to offer the Moving Towards Wellness course in May; and anticipate that both day and evening programs will be provided. The program has been developed in the US and has proven to be a very positive opportunity for people living with a chronic illness to significantly improve their emotional and physical health and well being. The first course will start on Tuesday 20th May; for more information contact Anne or Bill at MOSAIC Counselling on 8223 4566. Future information will be available soon and included in a mail out from the Hep C Council. We look forward to providing this great opportunity to many people in the affected community!

Hepatitis C Community News

Issue 22

Decisions With or without? Attending counselling with your partner or family When you have hep C, it may impact on your partner or family. Also, the way your partner or family cope with you having hep C will have an influence on you. Therefore, you might like to think about including them in counselling sessions. Of course for a variety of reasons some people prefer not to bring their partner or family. You don't have to have a huge "problem" to attend counselling. You can come once, a number of times or for a long period of time. Counselling can be an opportunity to "offload" in a safe environment, focus on your needs, explore your thoughts and feelings, clarify issues and concerns and work out strategies to deal with situations. One definition of counselling is R. Woolfe's (1989)

"Counselling involves helping people to become more aware of their own internal processes so that they feel more able and confident about their own decision making. In this sense, counselling can be described as a process of empowerment; giving people greater control over their own lives. Helping people to make their choices rather than giving them advice or telling them what to do is the basic character of counselling." The choice of whether you attend counselling with your partner/family is

yours. Sometimes people include their partner/family in some counselling sessions and attend on their own if they prefer to talk about some issues privately. Some situations where you might attend counselling with your partner/family include: · Disclosure issues: eg your partner is not handling your diagnosis the way you hoped; your brother stopped kissing you after you disclosed your hep C status. · Family issues: eg your father is having difficulty coping with the side effects of treatment; you don't seem to be as patient with the kids as you used to be pre treatment and it is upsetting your partner. · Relationship issues: eg your partner is concerned about transmission and it is affecting his/her behaviour toward you. She is finding it frustrating because you are tired much of the time. · Communication issues: eg your family don't want to talk to you about your hepatitis C; you are losing your temper with your partner and don't understand why. Sandy Breit Hepatitis C Counsellor at The Alfred Hospital, Melbourne Article reprinted with permission and thanks to Sandy Breit and the Hepatitis C Council of Victoria. First appeared in the publication “Good Liver” Summer 02 edition, page 9.

Hepatitis C Community News

Issue 22

Inspirations Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that frightens us. We ask ourselves “who am I to be brilliant, gorgeous, talented and fabulous?” Actually, who are we not to be? We are children of the Universe. Our playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around us. We were born to manifest the Glory of the Universe that is within us. It is not just in some of us it is in everyone. And as we are liberated from our own fear, our presence automatically liberates others. (Nelson Mandela’s Inaugural Speech– 1994)

Hepatitis C Community News

Issue 22

Eating Well Alison Martin, C-Clearly Nutritionist Accredited Practising Dietician Eating Well with Hepatitis Everyone agrees that a eating a good diet is important for people with Hepatitis. But while eating healthy might be simple in theory, in practice, it can be far from easy – with a small food budget and ‘no time’ being two of the most common problems. This article covers the very practical, but often overlooked issue of meal planning. Knowing what to do gets you only so far…without some meal planning strategies, eating well can be difficult and costly. To eat healthy while saving time, money & hassle, just follow these three simple steps: ♦

First, set aside some time to make a list of what you are going to have for breakfast, lunch and dinner for one week. Ask household members to suggest ideas or favourite meals.

♦

Second, use your list to draw up a shopping list, and stick to it. To avoid ‘pester power’, shop without the kids if possible.

♦

Then, once you have planned out a few weekly ‘menus’ and shopping lists, you can use them over and over and save even more time. Make a new 7-day menu plan at the beginning of Autumn, Winter, Spring & Summer, so you can buy in season and save even more money. See below to find out what vegetables and fruit are in season right now.

By planning meals you will: …Help you and your family be healthier – by planning ahead, you can make sure you include foods from each food group. Pay special attention to including vegetables and salads, calcium containing foods (such as milk, yoghurt, low fat cheese or calcium supplemented soy alternatives – soy milk, soy yoghurt or soy cheese) and protein containing foods (such as lean meat, poultry, legumes, nuts and eggs). …Balance your meals and snacks – if you plan for a meal that is higher kilojoule/calorie than usual, you can plan a low kilojoule/calorie meal for earlier in the day, for balance. For example, if you want to have pizza or fish & chips on Thursday nights, plan to have cold grilled chicken and salad for lunch that same day. …Save money, time and effort – when you plan before you shop, you will always know what you have on hand, and what you need. Shopping from a list also prevents ‘impulse’ buys. Planning meals ensures you always have something on hand that’s good for you, and you make fewer trips to the supermarket. You can also make good use of leftovers, which cuts down both cooking time and food costs. …Prevent worry and hassle – when you plan, you don’t have to decide what to cook at the last moment, and you will always have the ingredients for what you want to make. Scrambling through the nearly-bare cupboard at the last minute for something to have for dinner becomes a problem of the past!

The following guide lists when different fruit and vegetables are in season. When meal planning, try to buy fruit and vegetables in season, as they are not only cheaper, but they taste much better! (Continued next page) Hepatitis C Community News

Issue 22

Eating Well

continued Vegetables

Summer Fruit apricots, bananas, cherries, figs, grapes, mangoes, nectarines, oranges, passionfruit, peaches, pineapple, plums, rockmelon, rhubarb, strawberries, watermelon, paw paw Vegetables beans, capsicum, celery, corn, cucumber, lettuce, mushrooms, onion, potato, pumpkin, tomato, zucchini

Autumn Fruit

apples, avocadoes, bananas, figs, grapes, oranges, passionfruit, pears, rockmelon, watermelon

beetroot, broccoli, capsicum, cauliflower, celery, corn, cucumber, eggplant, mushrooms, onion, potato, pumpkin, silverbeet, spinach, tomato, zucchini

For more information on help with your diet, phone William, the C-Clearly project officer, on 8410 0466 and tell him you want to know more about the nutrition services available or would like to see the friendly C-Clearly dietician for some individual help or advice. C-Clearly is a project of The Health in Human Diversity Unit, Department of General Practice, Adelaide University. Funded by Commonwealth Department of Health and Aged Care, South Australian Department of Human Services. Supported by an unrestricted grant from Schering-Plough Pty Ltd.

The third community conference on Hepatitis C was held on March 17th 2003 in Melbourne. It was held as part of their awareness week launch and the various presentations encompassed a vast amount of discussion topics, too many to give full credibility too in this issue. However, as promised, we have an update on the results of the ‘Men Health & Hep C Survey’ The Experiences of Men with Hepatitis C: Results from a Cross-Sectional Survey. Despite hepatitis C (hep C) being acknowledged as a major public health concern in Australia, little is known about the social and personal health needs of men with hep C. This study followed a recent investigation of women with hep C, and aimed to describe the experiences of men with hep C with particular emphasis on issues around diagnosis, medical care, social support and access to specialist services and information. Over 300 men recruited from community groups, outreach services, clinical settings and alcohol and drug services in Melbourne and rural Victoria completed the survey. Most men (78%) said they had contracted hep C through IDU and almost half (47%) had spent time in prison. Most men were told they had hep C face-to-face (89%), although these consultations mostly lasted five minutes or less (59%). About one third (32%) were dissatisfied with how they were told and only 17% received pre-test

information/counselling. Almost 70% of men described their health as good to excellent and around half (49%) were satisfied with their current level of medical care. Only 37% of men had been referred to a liver clinic (29% at the time of diagnosis) and 21% had received some medical treatment for hep C. Although 39% of men felt uncomfortable disclosing their hep C status to health professionals, most did not perceive that they were treated less favourably than those without hep C by health professionals. Most men preferred to receive information about hep C from their GP (88%) or a hep C support service (78%) than from the internet (51%), a peer worker or Clean Needle Program (51%) or the media (42%).

Authors: Mark Stoove, Meredith Temple-Smith, Sandy Gifford (Deakin University) Anthony Smith and Mary O’Brien (Australian Research Centre in Sex, Health and Society).

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Clean Needle Programs NEEDLE & SYRINGE PROGRAMS SAVE LIVES AND MONEY Your seven dollar fifty cent tax investment in Australia's Needle & Syringe Program saves lives and returns big financial savings. The Needle and Syringe Program has been Australia's frontline defence against HIV/AIDS and hepatitis C virus (HCV). A new report now shows that NSPs have prevented around 25,000 cases of HIV and around 20,000 cases of hepatitis C and in the process, saved Australia up to $7.8 billion in treatment costs alone. The report - Return on Investment in the Needle and Syringe Programs - was launched by Australian National Council on Drugs chairman Major Brian Watters and Australian National Council of AIDS and Hepatitis Related Diseases chairman Chris Puplick. In addition to the monumental treatment cost savings, NSPs were also shown to have reduced deaths from HIV or HCV among people who inject drugs, and to have improved the quality of life among those who would have otherwise contracted HIV or HCV.

will begin to inject drugs." It is estimated that each new infection will cost the Australian health care system an average $39,000 in treatment costs. For the 16,000 new HCV cases (this year alone), there will be a total of $624 million in future health care costs. "This truly is a public health crisis, requiring immediate and concerted action," he said. "More money is not the only answer. We need to counter negative perceptions about NSP and get Australian society to accept and support HCV harm reduction across the board."

Taken with thanks from The Hep C Review, ED39, Dec 2002. Downloadable, soon, via www.hepatitisc.org.au

Please note that in South Australia we refer to these programs as â&#x20AC;&#x153;Clean Needle Programs.â&#x20AC;?

Mr Puplick said those who failed to support needle-exchange programs paid the price. "Cities that failed to introduce needle and syringe programs had an average annual increase of 8.1 per cent in the prevalence of HIV compared to cities that did introduce the programs where there was a decrease of 18.6 per cent in the spread of HIV," he said. "Government investment in needle and syringe programs has also been shown to be of great benefit to those infected with hepatitis C, with findings revealing that the prevalence of hepatitis C was higher in cities without needle and syringe programs and lower in cities with programs." Australian Hepatitis Council president Stuart Loveday said the report reinforced the need to support and expand needle-exchange programs. "NSPs are a proven HIV strategy among people who inject drugs, but an estimated 16,000 new HCV infections will occur each year until we act more decisively," he said. "We need a significant expansion of NSP and other harm reduction strategies, targeted especially among those younger people who have begun or Hepatitis C Community News

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StreetLink Exposed! My name is Leslie Dunbar and I have been meaning to write this story for some time. I am a single mum with two wonderful teenagers and until 1999 was working as a Midwife, in Labour wards around Adelaide, for a nursing agency. One night I suffered a back injury and my life changed...instantly! After 5 months of rehabilitation I was considered fit to return to work again, only to find hospitals reluctant to employ ‘damaged goods’. I found myself, for the first time in my life, spiralling into a depression, struggling to support my girls, wondering if I’d ever find a job, considering reskilling, not being able to express my frustration, everything was closing in!!

Service and amazingly…I GOT IT!!!! Since then it has been full on, most of you will be aware of my antics!!! But let me fill you in anyway. Streetlink Youth Health Service is a medical centre for homeless adolescents, from 12 to 25yrs, and their children. We provide medical appointments, nursing advice, social work support, drug and alcohol counselling, police drug diversion, hospital links and hepatitis C program. I have commenced one-on-one Hep C education sessions, safe injecting sessions, support and advocacy around hep C issues and am in the process of planning a ‘peer’ support network.

An old friend visiting Adelaide took me out for I have had the privilege of dinner on the Parade. an on-going association During the meal I saw a Leslie Dunbar with the Hep C Council women sitting at another and the benefit of their support and table that looked familiar, then it struck me… encouragement throughout the last year. Leslie Wightman (HCCSA Rural Education My life has been enriched by the new friends I Officer), we were at school together in have met at the council, my confidence Townsville a lifetime ago!! restored and my passions re-fuelled. We chatted briefly, and met the following week to catch up on years of news. During that I hope to continue firing up this sector and meeting Leslie suggested that I volunteer at the know that when ever I ‘pop’ over to see the Hep C Council. I was excited at the idea and amazing crew at the Hep C Council I am began volunteering the following week. greeted with the most welcoming faces and the best biscuits in town!!! The effect on my life was immediate. I had something interesting to do, stimulating things to learn and the most incredibly supportive Leslie Dunbar group of co-workers I’d ever experienced. As H.I.P.P. Community Worker/ Youth Advocate my interest in Hep C increased, I found myself Streetlink Youth Health Service researching Vertical Transmission and First Floor speaking at a women’s support evening. I was 27 Gresham St. a new person with a new passion and lease on Adelaide 5000 life! Ph. 8231 4844

In August 2001 I applied for the position of Hepatitis C Worker at Streetlink Youth Health 18

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Recipe Corner Mango Lassl Honeydew & Pineapple Whip

SERVES 3-4 2 medium mangoes 1 cup plain yoghurt (250g) 2 teaspoons honey 1 teaspoon fresh lime juice 2 trays ice cubes

SERVES 2 1 cup fresh pineapple juice 1 cup chopped honeydew melon 1 tablespoon lime juice 6 ice cubes

Roughly chop mangoes and put in blender. Add yoghurt, honey, lime juice and ice cubes. Blend.

Place all the ingredients in a Blender. Blend until smooth and pour into chilled glasses.

Serve in chilled glasses. This is a refreshing drink for breakfast or as a dessert.

Source: Cranston, M. (2001). Marie Claire: Food and Drink. New South Wales: Murdoch Books.

Brown Rice with Peaches SERVES 4 MAIN COURSE OR 6 SIDE DISH SERVINGS 1 cup short-grain brown rice 1 tablespoon olive oil 1 medium-sized red onion, peeled and finely diced 1 medium bay leaf 3 cardamon pods 2 cups chicken stock 3 large fresh peaches, seeds removed, flesh finely diced 12 fresh mint leaves, finely shredded Salt to taste Freshly ground black pepper to taste 4 whole-wheat pita breads Place the rice in a colander and rinse under cold running water. Drain. Heat the olive oil over medium heat in a large, heavy saucepan. Add the onion and sauté for 3 minutes or until it is translucent. Add the bay leaf, cardamon, rinsed rice, and chicken stock, and bring to a boil. Reduce the heat and simmer, covered, for 30 to 45 minutes, until the liquid is absorbed. Remove the pan from the heat and allow to sit, covered, for 10 minutes, until all of the stock is absorbed into the rice. Fold in the peaches and mint, season with salt and pepper, cover, and allow to stand for an additional 5 minutes. Serve with warm pita bread.

Zucchini & Eggplant Salad Small zucchini, gold and green, pencil & star shaped (2 or 3 per person) Pencil eggplants (2 or 3 per person) Spring onion (allow approx 1 per person) 1 small chilli (optional) Fresh coriander leaves Olive oil Salt & freshly ground black pepper Top and tail the zucchini & eggplants & cut into 2 cm lengths (stars may be quartered or halved). Heat a dash of olive oil, & stir-fry the zucchini & eggplant until lightly golden & softened (about 3-4 minutes). Add some chopped spring onion, green part too. Toss this through until the rawness goes, but not enough to take away it’s fresh look (about 1 minute), then add finely sliced chillies according to your taste. Toss through 1 to 2 tablespoon chopped fresh coriander leaves, salt and pepper to taste. Serve cold. Source: Based on recipe by Holuigue, D. (1997). Indulgence Odd Couples. The Australian Magazine, January 25-26.

All recipes gratefully reprinted from the Hepatitis Council of WA newsletter, “The C Files”, issue 91 December 2002.

Source: Goldstein, J. (1994). Mediterranean: The Beautiful Cookbook. San Francisco: Collins Publishers.

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Resource List

If you are interested in receiving any of our free resources, please call the Hepatitis C Council on 8362 8443

Hepatitis C Council of SA resources ! Hepatitis C Council of SA Inc. ! Hepatitis C!!?? What does it mean? (green) ! What is hep C – Low literacy (yellow) ! What is Hep C – Indigenous (red) ! Free Services for People with Hep C (green) ! ABC Positive????? (blue) ! Hep C – Women, pregnancy and babies (cream) ! Support group guide (lemon) ! C Talk – Positive speakers forum (yellow) ! Hep C Dental Care (pink) ! Hep C and sex (purple) ! Hepatitis C & Disclosure – Telling others…what’s the story? ! Hepatitis C – Information for family and friends ! At Home with Hepatitis C ! Hep C Community News-Newsletter of the Hepatitis C Council of SA Information packs (small sized envelopes) ! Hepatitis C Info Pack (contains selection of Council pamphlets, Contact 01 booklet, membership form) ! Treatment Info Pack (Contains information specific to combination therapy) Australian Hepatitis Council resources ! Contact 01 – Post-test information for hep C ! Women and Hepatitis C ! Complementary and alternative therapies for hepatitis C (out of stock) ! The guide to healthy eating for people with hepatitis C (out of stock) ! Preparing for testing – Hepatitis C ! Thinking about treatment (out of stock) ! Health monitor (tool for people with hep C to monitor their own health care including lifestyle, treatment, appointments, side effects and symptoms) ! Ready, Set, Combo! (NEW!) ! Living With Cirrhosis (NEW!) ! Moving on After Treatment (NEW!) Information/Fact sheets ! Combination therapy ! Genotypes ! Liver biopsy ! Cirrhosis ! Hepatitis C in Australia – a snapshot ! Fatigue ! Pegylated interferon Publications for health professionals ! Hepatitis C – The Facts ! Dental Health and Hepatitis C

! !

HIV/Viral Hepatitis: a Guide for Primary Care Hepatitis C – A Management Guide for General Practitioners (Australian Family Physician) (limited stock) ! National Hepatitis C Resource Manual (limited stock) ! Ambulance Officers and Hepatitis C (NEW!) Transcripts from Support Groups and Conference papers ! Testing and Hepatitis C (Dr Robina Creaser) ! Women and Hepatitis C (Dr Jo Thomas) ! Acupuncture and Hepatitis C (Lynn Lobo) ! Lesbians & Hepatitis C (Conference paper by Gai Lemon) Schering-Plough resources ! Understanding your liver Safe Injecting information ! Hep C and Injecting ! Safer Injecting (produced by the Australian Intravenous League) ! Spoonman-Sharing Info not Equipment (a wallet sized info booklet on safe injecting and hep C) ! Close Shaves (A Streetwize Communications Comic about Hep C and possible modes of transmission) ! Hep C (A Streetwize Communications Comic about Hep C – not for distribution in schools) Tattooing and body piercing resources ! Hygienic procedures for body piercers protecing the health of your customers and you. ! Hygienic procedures for tattooists protecting the health of yourself and your clients ! Safe piercing (postcard with information about responsible, hygienic piercing practice) ! Healthy body art (pamphlet) Postcards ! Spread the facts…not fear (test your knowledge about Hep C) ! Be blood aware (simple information about blood awareness and Hep C) ! This is Bloody Serious! (contains basic hep C facts) Posters and business cards ! Hep C Info and Support Line (Poster) ! Hep C Info and Support Line (Business card, wallet sized) ! Spread the Facts…not fear (Poster) ! This is Bloody Serious! Hep C Awareness Week 2002 (Poster) ! Basic Hep C info (Poster)

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